I just need a place to vent about my symptoms. I may be answering my own questions, but need to post. About eight years ago, I had my first bout with neurological problems. I have lifted weights consistently since I was 18 (now 48). My initial symptoms at that time came on all at once – after one workout, my thighs began twitching uncontrollably as I lay in bed that night. It was terrifying. And I felt horrible. I soon began having symptoms elsewhere – a numbness on the left side of my face that sent me from work straight to my doc to see if I had had a stroke (nope) and then numbness down my left arm. I also experienced a very strange “hollow” feeling in my legs and hands. They felt empty, like they had no weight to them. I convinced myself of ALS and thought about my death that would soon happen. I had a terrible depression. I kept my job, but barely. I went through three EMGs (normal) and a spinal tap (normal). I did get a BFS diagnosis at that time. I did not lift for a year.

Over time, the symptoms subsided, although I have had twitching throughout my body since then, more often in my legs. I eventually started to workout again (after one year), hike in the mountains again, etc. I have been working out steadily since then, except for about a month off for hernia surgery in the spring of 2012 (caused by too much heavy lifting). Put muscular bodyweight back on over time and feeling good. I recently achieved some of my best lifts since that time 8 years ago and just a week ago Sunday squatted 300 pounds for six reps and benched my bodyweight ten times. Not bad for 48. I also added walking with a pack to my workouts as I am supposed to go to Colorado in less than a month. My legs and entire body were getting a lot of physical work. I was feeling good, but I seem to have completely overtaxed my nervous system and brought on a second attack. I felt good just a couple of weeks ago. But now I feel like crap. My condition changed very quickly.

I had a terrible ache in my legs after being on them even for a short time, although it has lessened a lot over the last couple of days. Twitches like crazy in them, too, although I would take the twitches if I could get rid of the achiness. I am very tired, fatigued. I can sleep all night and wake up feeling more fatigued than when I went to bed. My hand symptoms have returned, also. They feel hollow. If I grip something, the feeling goes away and my grip strength is still there, although my hands do feel weaker. It’s very weird. They have stiffness as well. I have pins and needles in my feet that come and go. I also have “brain fog”. I feel like things that happened recently are far in the past. I have the twitches all over now – hands, forearms, scalp, chest. And periodically a tingling, burning sensation in my mouth. I of course have been on the web all over again about ALS, sensory symptoms, etc. (yes, I know that's not the thing to do). Would this be ALS after all? I see that some people report periods of remission, but I thought once it started, that was it. That someone would not have any kind of a recovery like I did from symptoms eight years ago if it was some form of motor neuron disease. Does ALS ever resolve to where someone would get back to working out once it started?

If anyone has experienced these or similar symptoms, I’d love to hear about it. I am going on the assumption this is BFS and that I will recover over time. Right now, I am afraid to lift for fear of making things worse. Thanks in advance for replies.

TerryB2865 wrote: Would this be ALS after all? I see that some people report periods of remission, but I thought once it started, that was it. That someone would not have any kind of a recovery like I did from symptoms eight years ago if it was some form of motor neuron disease. Does ALS ever resolve to where someone would get back to working out once it started?

You've got it backwards, Terry. BFS is very capable of and commonly has periods of remission and progression of symptoms as you've described. The thing you fear (ALS) can never produce your symptom pattern history. Never.Rest easy.

I see nothing in what you wrote that states you have or had clinical weakness. That is the primary symptom in the disease you fear (along with muscle wasting).

After 8 years, you would be written up in medical journals if you were the one case that ended up being <you know what>.

That being said, you say things that could indicate a vitamin deficiency (like B12 deficiency) - especially when you mentioned "burning mouth" and all your sensory symptoms. Have you looked at that? As you probably already know sensory symptoms point away from the dreaded disease.

And, Burger's right - you have way, way overtaxed your body. I live in Colorado - you don't need to train like that to visit my state (unless you're planning on climbing about 10 fourteeners while you're here).

Thanks for all your replies. They have eased my mind a lot. I will look into the B-12 and vitamin deficiency. The rapid onset of symptoms has just knocked me for a loop. My sensory symptoms come and go, especially the mouth sensations. Been twitching all over, more than normal. Normally, it's my legs and sometimes eyelid, forearms, triceps and plenty of other places, but I just have the twitching and not the overwhelming fatigue. Have cold feet and pins and needles off and on in them a lot of the time, too. Leg ache has improved a lot, though, over the past couple of days. The fatigue is probably the worst thing right now. I can walk on toes/ball of the foot and heels just fine. My grip strength is fine, although if I spread my fingers, I have no resistance strength if you were to push my fingers together. Have had that since the first episode eight years ago. The docs thought I had issues with the nerves at the elbow since my other tests were normal. It's just that I was feeling great, strong, energetic less than two weeks ago and now don't. Yeah, I know I caused it by too much heavy weights and not enough rest and easy workouts. And yes, I have been planning on hiking my first fourteener this year (Grays Peak) and then heading to Estes Park / Rocky Mountain National Park for about six days. Still three weeks out from all that and hopefully the fatigue will improve. If anyone else has suffered from fatigue in addition to the twitching and paresthesias, especially feeling more fatigued even after a full night's sleep, I would like to know. Thanks again for your replies and all the best to all of you.

You sound like it could possibly be adrenal fatigue or maybe chronic fatigue syndrome, because you're never feeling rested. You should ask your doctor about both as well as B12 deficiencies (and Vitamin D - both which are common on this board).

Kudos to you for climbing Grays. Be really, really careful, though. I don't want to sound like a Debbie Downer, but 14ers are not easy on anyone. Last time I climbed one (when I was 30 - so 14 years ago), I got altitude sickness. I was climbing Lincoln, Democrat, Bross (the same day - you go peak to peak fairly easily). I got up Mt. Lincoln and had to go back down due to a horrible headache and terrible nausea. I almost passed out. And, I have lived in Colorado almost my entire life (from elementary school on), so I was in a bit of denial that it could be altitude sickness. By the time I got back to the car with my sister, I was disoriented and confused. Once back in Denver, after a few hours I was fine.

I don't mean to scare you, but don't overtax your body. A 14er is tough, especially if you're not acclimated to the altitude. Drinks tons of water, and no exaggeration there...

Anyway, I'm hoping your symptoms will alleviate somewhat, and very sorry to hear you're going through a relapse. It's like BFS doesn't want to "let go" of us - even if we're feeling really healthy and strong, it can come back and bite us if we do anything wrong.

Thanks for the advice. I have summited 3 peaks in Rocky Mtn. Natl. Park, but no 14ers yet. Having a lots of tingling all over today and lots of twitching all over. But energy and brain fog are improving. I do remember my eyes being irritated and red when this attack started, almost like when you have the flu. My trip is in early August and I'll report back how things went. Hang in there everybody.

Just a quick modification to the "Drink tons of water" suggestion. Instead, drink tons of electrolytes. I did the tons of water thing with insane workouts, and all it did was deplete my system of minerals and sugars and salts that it desperately needed. You can enrich your water with sodium and sugars. You can drink gatorade during those intense workouts. You can squeeze lemons into your water if you want a very good electrolyte replenishment. Long gone are the days of plain water for me. Lemon water is a nice natural effective substitute. Make sure to brush your teeth though Just wanted to toss this out there.

I'd stick with Mitra's suggestion of drinking lots of water, and not sports drinks. The occasional sports drink is okay, but loads of water is really the key for high altitude conditions, as opposed to other forms strenuous activity. I just got back from the mountain trails myself, but avoided the 14'ers. I'm sure you've got it figured out by now.

The main reason to drink water is to stay as hydrated as feasibly possible due to the altitude. I've never heard anything but water recommended, so for the hike itself, I'd stick with water (maybe gatorade beforehand or afterwards to replenish electrolytes).

And be careful. Like I said, my last experience was horrible and I was in really good shape back then. Don't push yourself too hard. It is seriously not easy to breathe when you get to 10,000 feet or above, and I'm acclimated to altitude.

Luckily Grays is one of the easier 14ers (I think you can do Grays and Torrey in the same day - I haven't done them, but I've heard).

All that said, climbing a 14er is very rewarding and the views up on the peak are magnificent. Good luck!

Having felt bad for two weeks, I had an appointment with primary care doc yesterday (very thorough exam, passed the strength tests he gave, really listened to me) and gave blood for testing this morning. He is checking for lots of stuff. Will see him again one week from Friday. Two plus weeks after this started and I am still worn out. Legs get very tired and achy with just a little activity. Lots of twitches all over and still have the migrating paresthesias. My doc has requested my records from all the tests (emg's and spinal tap) I had during my first episode some eight or nine years ago. I feel sick. I don't have a fever and yet my girlfriend says I feel warm to the touch and my eyes are warm like I have a fever, infection or inflammation. Brain fog has lifted a bit, but I just have no energy. Pardon me for venting and thanks for listening.

I feel sick. I don't have a fever and yet my girlfriend says I feel warm to the touch

Having a lots of tingling all over today and lots of twitching all over

almost like when you have the flu

I can sleep all night and wake up feeling more fatigued than when I went to bed

This pretty much describes what I have gone through. Its a crappy waiting game. The blasted-tired in the morning thing was the worst. I still get it from time to time, the last episode lasted 2 days. Most of the time it was unexplainable for me when it did happened. I had bouts that lasted a couple weeks before. You just wake up and your arms, back, well, everything, feels tired and worm out like you lifted weights the day before; you have no energy; you have to PULL yourself through your day; muscles get tired and ache from stuff as easy as brushing your teeth; lots of weird buzzing, twitching, cold/tingling/almost numb/prickly/sun-burn/pins and needles stuff. Is that kind of how you feel?

The "feel like I have the flu" thing is also bad. I have not had that in many, many, many, months, but it was scary.

The only way I have made it go away is:

Throttle back - you just have to give it time, remember to rest, maybe not workout for a while. When you get back into working out, don't be surprised if your body has hit the reset button. Mine did when it happened to me, and I am still building back up slowly.

If your body tells you it needs sleep and rest, do it.

Drink plenty of water like everyone says, and eat healthy. I am not sure if supplements every helped me.

After a while I got back into exercise and that has made me a ton better, but I could not have done it a year ago.

Don't be surprised if your Dr comes back with nothing on the blood tests.

How long has this second bout been going on? Are you able to work, do chores/errands, live a normal life?

Yes, I am functioning, going to work, etc. This started up July 7 after about four months of really hard workouts. Completely wiped out feeling, although today it is better somewhat. Lots of twitching all over, tingling which migrates all over. Most troubling is my aching legs. I hit my leg work hard the past four months and I am convinced I am now paying for it. I can be on my feet for just normal around the house stuff and have to sit down due to the aching. That is the symptom that scares me when I read that MND can present with that. Also, lots of hand twitches. I have no interest in the things I normally am enthused about. Brain fog which still has not lifted. I just feel sick. Hard to describe. If that and the fatigue would lift, I would feel tons better. I sense my nerves are burned out. I am not myself at all.

I trust this is just BFS. It may be benign, but it doesn't mean we can't feel like crap. Right now my existence centers on doing as little physical activity as possible. I don't want to do anything else.

When I finally feel up to exercising, I am going to completely rework what I do. I'll lift, but not as hard. More stretching, walking and relaxation.

I hope I've answered your questions. Thanks for replying. It really helps to know others have gone through this s#*t and are better. Right now, it feels good health is a long way off.

You almost sound like a classic case of Chronic Fatigue Syndrome, or fibromyalgia (due to the pain). I hope your test results come up with something that you can work with and you'll start feeling better.